Livingwithxxy

Ryan is the president and founder of California-based non-profit Living with XXY. Ryan is a 37-year-old with Klinefelter syndrome or 47, XXY. Klinefelter syndrome results from an extra X chromosome, affecting roughly 1 in 500 males. Ryan’s parents learned about his XXY diagnosis during his mother’s pregnancy. His experiences navigating XXY and those of the over 600 families he’s met help guide and inspire Ryan's work today. While Ryan’s background includes work as a fine dining chef and action sports photographer, he currently spends most of his time advocating for his community through his non-profit. Living with XXY was officially established in 2019 and focuses on creating a community, spreading awareness, and sharing positive traits for those with an XXY diagnosis. Living with XXY is growing daily, reaching over 40 countries. Ryan is traveling around the US, meeting with clinics, professors/students, other professionals, and families to share the work of Living with XXY and create opportunities for connection for those with XXY.

Brittany is the mother of a 4 1/2-year-old boy named Callan. Their son was experiencing bloody noses at a young age. After a week in the hospital, Callan was diagnosed with Aplastic anemia, which is a rare but serious blood condition that occurs when your bone marrow cannot make enough new blood cells for your body to work. At the same time, he was also diagnosed with Klinefelter syndrome.

Anne Price had an NIPT screening due to her age of 41. One week later, while their family was on vacation with their two older kids, Anne received a call while waiting for the Finding Nemo ride at Epcot. Her phone rang. Her OBGYN, who had a very somber tone of voice, delivered the news horribly, telling her the results were a sex chromosome abnormality and the mention of Klinefelter syndrome. He said, "The good news is that your child doesn't have Down syndrome." The call got disconnected, and Anne couldn't leave the line, so she started to cry uncontrollably during the ride.

Kelly Stine is the mother to Connor, who is 17, a senior in high school. Connor encourages other boys his age to share their stories and help build a community for teenagers with XXY. Connor loves to play Roblox and Brawlstars. He also enjoys his government class because his teacher is super funny. At the end of 10th grade, she noticed his maturity was not developing like others. After some blood work, Kelly noticed his FSH levels were off the charts. She started to learn about Klinefelter syndrome and asked her doctor to do a Karyotype. Once he was diagnosed, they did Micro-Tese which came back negative. Kelly says "starting testosterone has been a night-and-day difference for Connor."

Carson Blake shares with us about her son Louden, who is now four years old and has been in Early Intervention since he was six months old. Carson talks about why EI has been super helpful for her son and his accomplishments. Carson also got her state of Missouri to add Klinefelter syndrome to the First Steps Early Intervention system for infants and toddlers, birth to age three, who have delayed development or diagnosed conditions associated with developmental disabilities.

Colleen Sander's son, Jackson, was born at 29 weeks and wasn't speaking at the age of two. Once Jackson started school, he was given speech therapy, and over time, something didn't seem right for Colleen. Jackson, 14, had some routine blood work done a few days before receiving a strange phone call from the NHS on a Sunday evening around 9 p.m. The doctors asked for him to come back and do some follow-up testing. Colleen jumped on Google to research what the results might have meant. She started to cry when she was reading about Klinefelter syndrome, checking all the boxes off that this was most likely what her son could have.

Jessica Henderson's journey to diagnosis started with her firstborn son, Clay, who is now 18. When Clay was two, Jessica's Grandmother offered to pay for speech therapy. School started to become challenging for Clay in the third grade. One of the teachers told Jessica at a parent-teacher conference, "I've just learned to expect less from your son".

Michael Bush is the father to Carson, an 18-year-old diagnosed with XXY at 15, and together, they want to inspire other young men and their parents to do a podcast. Carson shares his story, from being unable to talk about XXY to his love of teaching people about it. At the age of three, Carson hit his peak in growth, and by the time he was five, he started taking growth hormones. Around 12, Carson was experiencing mobility issues, and their family doctor thought he might have Heller and Danlos syndrome. Michael wants people to know that having a child with XXY is okay. Carson grew up being a normal child, riding bikes and playing outside. Michael also wants to encourage parents not to shelter their boys because of this diagnosis and says everyone will face challenges in life.

Carolina is the first person from Brazil to share her story on our podcast. She was 35 when she was pregnant so her OBGYN was concerned due to her older age. She asked her to proceed with doing an NIPT. After the results came in, her doctor called her and said she was having a boy with XXY. The doctor also told her his life would be fine, and that he might have troubles with fertility. Her son is also a rainbow baby, which seems very common among our XXYcommunity.

Melvin Amantiad was born and raised in Hawaii. When Melvin was in his early 20s (1980s for reference), he went in for a check-up for prostate cancer because he was having pain in his growing/stomach area. Because of his body shape, his doctor suggested doing a karyotype test. The test results came back positive for XXY. He was given a pamphlet from the doctor and sent on his way. His doctors scared him with the idea of being put on hormone treatment that it would make him very aggressive and get into trouble with the law.

Tara Whitfield shares her story about her son Westin. Her first pregnancy ended in a miscarriage. When Tara was ten weeks pregnant, she opted for NIPT. Being a nurse, when the results came back positive for XXY, she had never heard of it. Tara has listened to every single podcast, and it has been a light for her in dark times during her diagnosis. She hopes that her story will encourage others to share their stories.

Toby Voige, age 15, shares his experience from his recent trip to Denver, Colorado, while participating in research. The Lipids to Fat study aims to see how boys with XXY bodies use fat as an energy source. Dr Shanlee Davis is the lead on this research. If you would like to learn more, please click the link provided and watch the video. Details about the study are in the video description https://www.youtube.com/watch?v=Mub4Mx6TkOk

Amanda found out she was pregnant in 2020. Having a background in the OBGYN field, they did an NIPT because they wanted to know the gender of their child. Amanda went online to her medical account to find the test results were completed before her doctor could call her. She saw the results said male, but it was also flagged as XXY. Her doctor's office didn't know much about the diagnosis and referred them to a genetic counselor who said, "if your baby is going to be diagnosed with anything, this is the one you want."

Daniel Sharp was overweight at 24 and went to the doctor to see if they had any answers to why. The doctor talked to Daniel about having low vitamin D levels and lower testosterone. She suspected he had Klinefelter syndrome, but no further testing was done to confirm. After meeting his first wife, they tried to have a baby for two years, with no results. He did a sperm test and found out he had zero sperm. The doctors attributed his no sperm to him being overweight. His first wife divorced him because he was unable to have kids.

Nick Rodriguez has had his own contracting business since the start of the pandemic. He plays semi-professional football as an offensive tackle, and his team won the state championship. When Nick was 14, while playing football, he couldn't build muscle like his gym peers. His freshman year's max on bench press was 95 pounds, weighing 215 pounds at 6'4". His mother took him to the doctor, knowing he could not build muscle, and the testing began. Later, Nick found out he was diagnosed with Klinefelter syndrome/47XXY.

Mariah, 25, and Romone, 27, learned about Klinefelter syndrome at their 20-week appointment after their results from NIPT testing. They opted out of doing an amnio and waited till birth to confirm. When they learned about the diagnosis over the phone, being on Google while the nurse told them about the diagnosis was horrifying. The nurse tried to comfort them by saying its most likely a false positive.

Deepak's family is originally from India. He was born in Brooklyn and raised in West Texas. At age 28, he and his wife started trying to have kids. After visiting over 14 doctors, many told him he didn't fit the stereotype of having Klinefelter syndrome. At 43, he's decided to share his story to make a difference. He says, "It's been a journey."

Grace Hatton is the mother to four beautiful children. She received Non-invasive prenatal testing (NIPT) with her youngest son. After a personal phone call revealing the diagnosis from her doctor, they both were excited. She felt a sense of calm and comfort in her son's XXY diagnosis and knew she could handle it.

Welcome to our first-ever father-and-son podcast! Michael Bouley is a fantastic dad to Hunter Bouley, age 21. Hunter was born with club foot affecting one leg, which led the doctors to think something else was happening. Around puberty, Hunter was diagnosed with XXY, and things started to make sense as to why he struggled in school with comprehension, math, and physical development. In the 7th grade, he went from homeschooling to public school for the first time. Despite being bullied for looking different over time, it taught Hunter to focus on his goals regardless of the setbacks he faced. Hunter has worked hard his entire life to overcome his challenges. His Instagram shows a well-defined muscular man who has devoted his life to nutrition and working out. He drives a forklift at a lumber yard using his visual memory while working with his hands. He loves hanging out with his family and large-mouth bass fishing. Despite having trouble with expressive language, Hunter knew sharing his story would help others know they are not alone. Hunters Instagram: @hunters.fp

Toby joined track and field at his local high school. Nervous for his first race, Gareth found out and sent his mother this incredible pick me up voice message. This is what supporting eachother is all about and why being open about having XXY is so important. Positive support from our peers is another thing that makes this community incredible.